Above

and

beyond

Over the past year, Holland Bloorview Kids Rehabilitation Hospital and Foundation have gone Above and Beyond to build and create a world of possibilities for children and youth with disabilities.

This year’s report presents an opportunity to reflect on our achievements and to share the extraordinary work and impact we have had within and beyond our walls. This reflection is well timed as we are set to embark on No Boundaries, our ambitious new strategic plan that was co-created with kids, youth, families, staff and community partners.

At Holland Bloorview, we serve children, youth and families who compel us to go above and beyond. Their presence fuels our desire to provide exemplary care, integrate the voices of kids, youth and families in all that we do and drive excellence in research, teaching and program delivery.

Take Tessa’s story for example: an infant born without a left hand, which made activities like crawling and playing a challenge. Working with our team of scientists, clinicians and students, a functional infant prosthetic hand was designed and manufactured using 3D printing, giving Tessa and others like her, newfound freedom to play and learn.

Over the last year, our scientists presented their findings in countries around the world. With $6.8 million in external research funding, we were able to support scientists like Dr. Amy McPherson who is exploring the impact of obesity on kids with disability. As well, we were pleased to appoint Dr. Evdokia Anagnostou as the inaugural Dr. Stuart D. Sims Chair in Autism, recognizing extraordinary academic leadership in understanding and enhancing quality of life for kids living with autism spectrum disorder.

We also announced significant philanthropic gifts to fuel research and our transitions strategy and launched new public engagement campaigns, like Capes for Kids, which helped double the number of Holland Bloorview supporters in the community. Their generosity has a direct impact on the lives of nearly 7,500 children and their families who access programs, services and care here at the hospital.

We invite you to explore our impact report in detail to learn how our clients, families, employees, students, volunteers, donors and community partners are co-creating the most meaningful and healthy futures for all children, youth and families.

Cally HuntChair, Board of Trustees
Holland Bloorview

Jason SmithChair, Board of Directors
Holland Bloorview Foundation

Julia HanigsbergPresident and CEO
Holland Bloorview

Sandra HawkenPresident and CEO
Holland Bloorview Foundation

Technology's potential to improve the lives of kids with autism

Scientist Dr. Azadeh Kushki explores how technology can make a real-life impact.

Technology's potential to improve the lives of kids with autism

As Ontario Premier Kathleen Wynne spoke to 14-year-old Liam Cosgrove at Holland Bloorview during her tour in February, Dr. Azadeh Kushki held her breath.

As the Premier chatted with Liam, who has autism, he showed her the Anxiety Meter – a technology being developed at Holland Bloorview by Dr. Azadeh Kushki, a scientist at the Bloorview Research Institute. The Anxiety Meter is a digital tool used with an iPad or tablet that can detect anxiety levels by monitoring a child’s heart rate.

“When you get anxious your heart rate changes significantly,” said Dr. Kushki, noting that most children with autism experience significant anxiety that can negatively impact physical and mental health.

Colour coded

To use the Anxiety Meter, a child wears wireless sensors – small stickers that monitor the heart rate and the Anxiety Meter translates this into a visual display on a tablet through a colour gradient. There is an indicator bar that does up and down the gradient – if the bar is in the green zone, you’re calm. If it moves up into the red zone, you’re anxious.

Once a child reaches an anxious state, he or she can begin managing that anxiety through trained responses, such as deep breathing exercises. But as Liam spoke to the Premier, it was Dr. Kushki who was feeling anxious. The bar remained in the green area, which surprised her. Surely a 14-year-old having a discussion with the Ontario Premier in front of flashing cameras would cause a little anxiety, wouldn’t it?

Change of subject, change of mood

The topic of conversation then turned to situations that made Liam nervous. He admitted that seeing a new teacher at school that he’s never met makes him a little uneasy. Suddenly the bar began moving closer and closer to the red zone. Liam also admitted elevators make him nervous, and the bar moved even further. “It was an amazing moment because as the bar went UP, Liam started his deep breathing techniques,” said Dr. Kushki.

Encouraged by this real-life demonstration, Dr. Kushki and her team continue to develop the Anxiety Meter and are just about finished their clinical testing and ready to make it available to the public. (Dr. Kushki and her team are also developing a wristwatch version that doesn’t require any sensors.)

Technology’s terrific potential

Dr. Kushki believes that technology like this could have a huge impact on the treatment of autism.

She doesn’t think it will ever replace face-to-face therapy, but it could be a very powerful complimentary tool. She also believes kids and adults with autism often show an affinity towards technology - but why? “One of the reasons is that technology provides a predictable setting for interaction,” she said.

For many kids with autism, unfamiliar spontaneous social interaction triggers anxiety. Technology such as apps offers a controlled way of interacting with specific outcomes. That structure might put them at ease. Plus, technology can be adjusted to better suit each child. “It’s like when you play a video game,” said Dr. Kushki.

“You start at option one, two, or three and you can choose the option that’s best for you,” she said. ‘Whereas when you’re in social situations, you don’t have that option.”

Special glasses for social interaction

That concept of responding positively to controlled interaction is what’s driving the development of another piece of technology at Holland Bloorview called Holli. It’s designed to help children with autism to interact socially. Holli uses the Google Glass, which looks like ordinary glasses, to coach children during social interactions. Holli uses the Glass microphone to listen to voices and the tiny Glass optical display to give a user appropriate answers – taking the guesswork out of conversations.

For example, the interaction being tested now is a conversation one might have when ordering at a restaurant. A server might ask, “What would you like?” The Google Glasses would then show options on the display like, “I would like a hamburger” or “I would like a sandwich.”

While still early in the development phase, Dr. Kushki can see this technology being used for a variety of social situations, like going to a library or going to a store. With devices like the Anxiety Meter Holli, it’s no wonder Dr. Kushki is so excited about the future, and specifically, about technology’s potential to improve the lives of kids with autism.

Lightening the burden of weight-related conversations

Lightening the burden of weight-related conversations

Dr. Amy McPherson wants to break the silence.

Kids with disabilities have two to three times higher obesity rates than typically developing children. That can lead to mobility issues, and several other negative health implications, not to mention an impact on self-esteem and quality of life.

“In my research we’ve found that healthcare professionals are reticent about bringing it up,” said the scientist at Holland Bloorview’s research institute. “They worry about what’s going to happen to the relationship between themselves and the client and the client’s family.”

To preserve that relationship, Dr. McPherson is working with knowledge translation specialist, Christine Provvidenza, as well as clients, families and clinicians to develop a digital casebook that will teach healthcare professionals how to have helpful weight-related conversations.

$6.8 in external research funding

63 peer-reviewed articles published

It’s for physicians, nurses, physiotherapists, occupational therapists, anyone who has interaction with kids with disabilities. This casebook is the culmination of weight management and wellness research over several years from different groups, including kids with spina bifida, muscular dystrophy, autism spectrum disorder and other conditions.

“Now we’re in a really great place,” said Dr. McPherson. “We’ve got all of these findings and we’re trying to combine them all into this practical resource.”

This won’t be a rigid textbook, stressed Dr. McPherson. It will be a living breathing online resource filled with tips, case studies, video simulations, accounts of experiences as well as links to published research reports.

Dr. McPherson is planning to unveil her casebook on October 11, for World Obesity Day 2017. But in the meantime, it’s already generating plenty of buzz.

“There’s a lot of energy around this,” she said. “So many clinicians and researchers are excited about this project. They’ve already given me their names as people who will test it out for us.”

While the casebook’s information will be diverse and varied, some central themes will be evident. Regardless of the diagnosis or situation, the conversations should always be respectful, strength-based and motivational…and never, ever critical.

This is especially true for kids with disabilities in rehabilitation settings who may already contend with plenty of challenges and obstacles.

“There’s myth out there that we should make people feel bad or guilty about themselves to motivate them to lose weight and there’s absolutely no evidence to support that,” said Dr. McPherson.

“We’re also trying to get away from a number on a scale,” she continued.

“It’s not about eat less, move more, it’s about an overall healthy lifestyle and what that means to individual children and families. It’s about a child’s self-esteem and behavioural change that reflects what the children and families want.”

“That’s woven throughout everything we do around this topic and will be one of the casebook’s core principles.”

Dr. McPherson’s research is made possible through grants from the Canadian Institutes of Health Research, Muscular Dystrophy Canada, Spina Bifida and Hydrocephalus Association of Canada, Centres for Leadership in Child Development and Innovation, and The Holland Bloorview Kids Rehabilitation Hospital Foundation.

Holland Bloorview delivers hip check

Holland Bloorview delivers hip check

Having their hip slide out of joint is sometimes a painful reality for children and youth with cerebral palsy (CP).

Hip dislocation greatly affects mobility and movement, and it also forces the caregiver to be extra careful – suddenly, simple activities like dressing or leaving the house become much more difficult.

Wanting to better address the frequency and difficulties associated with hip issues, Holland Bloorview physicians, nurses, physiotherapists and other staff developed their own “hip surveillance clinical care pathway.”

Specifically designed for kids with CP, this evidence-informed tool provides tips, guidelines and checklists to help practitioners better detect hip problems and provide optimal care to manage them. The pathway has been in practice for over a year and the positive impact is tangible.

Currently, 95 per cent of the kids with CP seen at Holland Bloorview undergo this hip surveillance care pathway.“It helps clinicians detect hip problems earlier on and ensures they get the treatment they need as soon as possible,” said Holland Bloorview physiotherapist, Chun Kim.

“Initially, only a third of our clinicians were using some type of formalized pathway to screen for hips in cerebral palsy,” said Dr. Anne Kawamura. “After implementing the pathway, 100 per cent of our clinicians now follow it.”

Thanks to the pathway, caregivers, physicians, nurses and physiotherapists have a better sense of when to do a hip X-ray to check for hip sliding. They also know when to refer kids to the hypertonia clinic to treat muscle spasms and stiffness, or to the orthopedic clinic to treat shortened muscles and improve the child’s hip position.

For front-line staff, hip surveillance is more top of mind and has led to more conversations between families and clinicians about hip problems. Conversely, the pathway has also enabled parents to be more aware of this issue and helped them speak comfortably with healthcare providers about maintaining hip health throughout their child’s developmental years.

This pathway is proving to be so effective, Holland Bloorview is sharing this tool with other hospitals and healthcare partners, sharing information about the pathway, as well as insight into clinical assessment and reading hip X-rays.

The team recently shared the pathway with new networks through the Ontario Association of Children’s Rehabilitation Services (OACRS) and internationally at the American Academy of Cerebral Palsy and Developmental Medicine Conference.

With both institutions applauding Holland Bloorview’s pathway and sharing it with their international partners, the vision and expertise of our hospital will undoubtedly contribute to better hip health for children with CP worldwide.

“The idea was to develop something smaller for smaller children and to possibly make it a little bit more functional,” said Koreen.

Working with a cross-section of researchers, clinicians and advisors, the students designed a small hand prosthetic that consisted of a bendable endoskeleton covered in a flexible plastic body, created through 3D printing.

The hand could be positioned to grip objects and was strong enough to support a child’s weight when crawling.

As Tessa and her family live in Owen Sound, Ontario, they were able to take a prototype home for Tessa to use for about a month.

She took to the new prosthetic immediately.

“It was one of those moments where you think, ‘She will be OK…there are things here to help her,’” said Koreen.

“It was really exciting,” she continued. “Once she figured it out, she had a blast. We got to see Tessa explore and develop as well as further explore her world as an infant.

“She would put things in her hand and look at it. You could see on her face she was thinking, ‘Hey, this is kinda neat!’”

The students had a similar reaction.

“It was incredibly fulfilling to see a real child use our design,” said student Ian McKenzie. “Our design was a huge improvement over the commercial prosthetic hands they had been using.”

Working with Koreen and Tessa, as well as Holland Bloorview clinicians, Ian added, “They are some of the most inspired people I’ve met and it was a pleasure working with them.”

The students’ design earned far more than praise from the family and the hospital. The team earned first prize at the IEEE Engineering in Medicine and Biology Society International Student Conference 2016 in Ottawa in May.

Tessa is now a very active and rambunctious three-year-old. She’s wearing a larger prosthetic and her parents feel this research project really made them aware of what’s possible for their daughter in the future.

“It really opened our eyes and encouraged us to look at new and developing technologies in this field,” said Koreen.

From client to career-minded – a young man’s journey

From client to career-minded – a young man’s journey

The 22-year-old student is currently in the Social Service Worker program at Seneca College and has about a year to go before he graduates. He’d love to become a recreation and leisure therapist.

“I think I’m good at talking to people and understanding what they need, especially people with disabilities,” he said. “I’m able to understand the disabled community a little more because I’ve lived it.”

Marko has cerebral palsy and has been coming to Holland Bloorview for various services and programs for most of his life. While grateful for all of the care and therapy, it’s the hospital’s transition programs that have played a major role in shaping his future.

Marko took part in the hospital’s Youth@Work program in 2011 where he worked in the hospital’s mail room, giving him a taste of employment.

He also took part in The Independence Program (TIP) in 2015 where he lived at a Ryerson University residence for three weeks where he learned independent living skills such as cooking, money management and navigating the city’s public transit system.

And in addition to his studies, Marko currently works part-time at Holland Bloorview as a lounge host where he connects with teen clients who have been admitted as inpatients.

He offers company and advice while playing video games and board games, sharing what he knows about the hospital. He also shares his insight about the difficulties that youth with disabilities face in making transitions.

Unfortunately, transitions from high school to college or university or from school to employment are often challenging because of a stigma that still exists. “I find sometimes that people don’t want to talk to people with disabilities because they feel that something is wrong with them because they look or talk a certain way,” he said.

“Even though I might look different and use different mobility devices to get around, I’m still a person and you can still come up to me and talk to me.”

Thankfully, at Holland Bloorview Marko never worries about such judgements, not when he was a client and not now as an employee.

“When I put my lanyard on people have respect for me,” he said. “They treat me like a regular employee which is how I want to be treated.”

Working here has helped him feel comfortable asking for direction, and he’s not concerned about making a mistake. “Holland Bloorview is such a great place to work because they’re so accepting of people with disabilities, but I can’t work here forever,” he acknowledged.

“And that’s my fear about working somewhere else. If I do make a mistake they won’t understand like they do here…workplaces outside Holland Bloorview might be a little different.”

Regardless of his employer or position, Marko is ready to bring the same dedication and hard-work ethic as he begins the next chapter of his life with the skills, experience and confidence he’s gained at Holland Bloorview.

A hero with or without her cape

A hero with or without her cape

When Ashley Spry’s dentist walked in for her appointment, it was his mouth that opened wide. It’s not every day that one of his patients comes in for a check-up wearing a bright red cape.

Ashley is a nurse on Holland Bloorview’s Complex Continuing Care (CCC) unit that serves children and youth with complex medical needs or who have multi-system diseases.

She’s been with the hospital for 12 years and just loves her job. She especially loves seeing those precious moments of joy and happiness on the kids’ faces. “My clients have a harder time showing and sharing their specialness, so there is nothing better in my day than to be able to make a client smile,” she said.

625+ people joined forces and fundraised for Capes for Kids

$390,000 raised for kids with disabilities

“I’m talking about a non-verbal client who can’t smile the way you and I do, but smiles with a flicker of their eye, a wiggle of their tongue, or placing their hand in yours while you read to them.”

She’s also watched kids have a similar reaction at the sight of the therapeutic clowns and witnessed pure delight in the faces of kids taking part in art therapy, loving the experience of being creative and expressive.

She also knows programs like these and others such as the Family Support Fund, respite care programs and the Spiral Garden summer camp are supported solely by donations and are a vital part of the hospital’s care. “I see donor dollars all over the building,” said Ashley.

That’s why she donned a cape for Capes for Kids in March and proudly wore it everywhere – to the grocery store, to the gas station, at restaurants, and of course, to the dentist.

Holland Bloorview staff attend awards gala after being named one of Canada's 10 Most Admired Corporate Cultures in 2016.

She loved wearing her cape and welcomed all conversations that it sparked. “I felt good, I felt proud,” she said.

Ashley decorated several capes for the campaign, wearing a different one every day of the week. One was decorated in Lego while another was covered in rainbows.

And if that wasn’t enough, she also made tiny little capes out of red cloth and personally handed them out to every donor that supported her during the campaign. By the time she finished, she handed out 47 of her mini red capes and raised just under $1,500 for Holland Bloorview.

“When I see what donations can do, it’s well worth looking funny for a week,” said Ashely who’s already excited about next year’s campaign and vows to raise even more.

“I would love to see it not just in the GTA but make its way all across Ontario and Canada. The goal is to get Holland Bloorview to become a household name so we can help more families that may not know we’re here and that we can help.”

Client-centred care through client-driven quality

Client-centred care through client-driven quality

At Holland Bloorview Kids Rehabilitation Hospital, we believe the best way to provide safe and high quality care is by making families part of our quality and safety team.

Every four years, Accreditation Canada gives organizations a chance to look in the mirror and find ways to raise safety standards as well as the quality of their services.

At Holland Bloorview, we didn’t just want to meet Accreditation Canada’s recently updated client- and family-centred care standards, we wanted to exceed them.

That led to embedding 17 family leaders into its accreditation working groups across the hospital.

”We think of them as the hospital’s accreditation dream team,” said vice president, programs and services, Diane Savage. “Holland Bloorview staff and family leaders have come together to create the Family Leader Accreditation Group as equal partners.”

Together, they shared and exchanged ideas for safety initiatives, providing support and insight to one another through the process.

Holland Bloorview’s quality, safety and performance team, along with family leaders, also partnered with the Canadian Patient Safety Institute to update and contribute to the Patient Safety Education Program’s existing learning modules.

Holland Bloorview’s participation ensured that this national patient safety program truly reflects what is meaningful to the client and family, and gives clients and families the opportunity to not only learn, but train others.

Following this “teach and train” model, Holland Bloorview family and youth leaders (some as young as 16 years old), as well as hospital staff , recently delivered the education program to other staff and intends to train over 200 patients and families in the next few years.

"The Patient Safety Education program builds a bridge between health professionals and patients, which truly exemplifies client-centred care,” said youth leader, Nikoletta Erdelyi, who took part in a patient safety training program.

“Patient safety is everybody's concern. Strengthening safety initiatives will help ensure that everyone receives top quality care," she added.

This fall, in partnership with the Canadian Patient Safety Institute, Holland Bloorview’s quality, safety and performance team will be taking this client-centred approach to quality and safety beyond our walls to a national audience.

Holland Bloorview has a long history of going above and beyond to improve, transform and provide high-quality and safe care for all clients and families.

Brothers bond (and bicker) over battling robots

But motorized LEGO® robots that battle each other? C’mon, it doesn’t get any better.

Fourteen-year-old Jud and 10-year-old Jes have taken part in two Holland Bloorview Robotics programs and can’t wait to do it again.

Running three times a year (fall, winter, spring) Holland Bloorview partnered with FIRST® Robotics Canada to create this program that gives kids with disabilities between ages six and 14 the chance to become robot designers.

Working with mentors, the kids use LEGO® systems called WeDo™ and Mindstorm™ – advanced systems that, in addition to plastic pieces, includes wheels, motors, wiring, gears other devices that can be programmed and controlled via computer.

Together, the kids build robots that move, rotate, grab things, or do battle with one another. To date, the program has welcomed more than 120 kids.

“I’ve never seen kids so engaged,” said Robotics coordinator, Lynn Rampertab. “We actually had to push them out the door at the end of class…they’re just not ready to leave.”

Like LEGO®, this program builds academic and personal skills for all participants.

It builds a stronger understanding of science, technology, engineering and math (STEM), potentially helping this with school.

It builds social skills as the kids build strong friendships. And it builds other skills like critical thinking and problem solving, as well as self-confidence.

Yet another benefit – many kids with disabilities rely on technology for day-to-day activities, whether it be an electric wheelchair or a communications device.

The program empowers them with a greater understanding of how technology works and gives them the opportunity to create technology themselves.

But for Jud and Jes, who have been Holland Bloorview clients for ten and six years respectively, it’s all about the building and the fun.

Jes and Jud with their parents

“We were building lots of stuff, and we built one robot where you had to pick up trash, and we pretended it was trash in the sea,” said Jes.

However, they admitted that when building robots together, it did bring out some good-spirited sibling rivalry.

“We always fight,” said Jud, noting they disagree as to where the pieces should go or with how something should be designed.

“But usually, I’m right,” said Jes smiling.

“Oh really?” replied Jud, adding, “I taught him everything he knows.”

The highlight for both brothers was going head-to-head with each building a robot that would try to push another robot out of a designated playing area, much like sumo wrestling.

The brothers didn’t quite see eye to eye on who won, though each claimed victory.

Robotics, powered by Holland Bloorview and FIRST® Canada, sponsored by Capital One with additional support from Argosy Foundation.

Parents teach Inclusive Classrooms 101

Parents teach Inclusive Classrooms 101

Teachers across Toronto are being trained by Holland Bloorview parents in the fine art of making their classrooms more inclusive for kids with disabilities.

Members of Holland Bloorview’s Family Advisory Committee (FAC) worked with hospital staff to create the “Classroom Integration Workshop Toolkit.” Shoshana Hahn Goldberg, co-chair of the FAC, and other FAC members have been presenting a toolkit workshop to Toronto-area public and private schools for the past two years to rave reviews.

“The presenters did an excellent job in opening our minds to all kinds of possibilities in how we could enhance students’ experiences,” said Paul Friberg, principal of Ledbury Park Elementary and Middle School. “The workshop has inspired our staff to rethink their whole approach regarding inclusion and what that really means.”

The presentation is an hour long and it’s filled with tips, handouts, case studies, as well as videos of parents’ positive experiences around inclusion. But the majority of the workshop is hands-on.

“Teachers take part in working sessions where they are given a scenario of a child with specific needs and a classroom activity that they have to then work through to ensure that child is included,” explained Shoshana.

Here’s an example: Sara is a seven-year-old girl attending Grade 2. She has no difficulties with her vision, hearing or speech and her cognitive skills are above average. She uses a wheelchair to get around and needs getting in and out of it. She can hold on to certain objects, but can’t maintain her grip. Her class is going on an apple picking trip. The ground is very uneven and Sara will not be able to use her hands to pick apples.

Teachers participating in the workshop would be challenged to think about, “What is the best way to include Sara in this trip?” The toolkit’s central message for this, and all other scenarios: “small changes can make a huge different to a kid’s classroom experience,” said Shoshana. “I think teachers really appreciate the message and can apply this easily.”

Michael Fraser, a teacher at John McCrae Public School, has seen the positive impact of this workshop first-hand. “Staff approached me to say they really found the workshop interesting,” he said. “They specifically mentioned shifting their thinking away from meeting the needs and interests of an individual student towards helping the student be one of the group.”

“It’s all about creating a culture of inclusion,” said Shoshana. “We wanted to give the family voice to teachers so that they could benefit from our lived experience.”